An acquaintance, someone I once knew well but have largely drifted apart from, posts about her son's screaming in response to various stimuli. She doesn't know why it happens, she says, but it's wearing her down and she doesn't know how to manage it. She's a parent in need of more support than she's getting, like many are. You'd have to be a parent to understand, she says.
My fingers hover over the comment box. I'm pretty sure I know exactly why her son is reacting why he does. I have some educated guesses on things that would make life easier for him - but they start from a different philosophical viewpoint to that she appears to hold. You'd have to be a parent to understand. I click away.
Another time - and really this isn't one time, it's hundreds - I look for advice online on how to do things in a way that accommodates my needs. How to learn to drive. How to arrange meals in a way that works for me. How to survive the commute when people insist on playing music audible over their headphones. I mostly get strategies for helping one's child through primary school. Once I try looking to see if tiredness is a probably cause for an increase in impairment I noticed at a particular time; instead I find posts from parents complaining how tired they are of their child's disability.
I get frustrated by it. The various frustrations subside into one. There's an unspoken assumption that it is the needs of our parents only that matter, and when we cease to be their problem those needs disappear also, or that our needs disappear at age 18* because people fail to acknowledge that just like anyone else we change and grow up and find better ways of interacting with the world, and thus see any changes as a cure. Where less autonomy was a horrible thing - and it was for me - being thought of as a child instills fear. And then there's a feeling of looking at children who are very like you were, and watching the same mistakes being made over again, and you know that it generally has little to do with individuals and far more to do with a society but you're really not sure how to express that to an already stressed out parent.
Then I start thinking elsewhere. And I think of what we do in the queer community. Queerness isn't generally equated to childhood - the opposite in fact, with may queer kids being told they are far too young to understand their identity. And whilst some people do feel the need to be wary of interacting with young people, there are more of us who can't see a kid in school uniform smiling in a queer friendly space without feeling teary.
So when we see marginalised kids in our community but aren't afraid of being considered children ourselves, what do we do? We send books to them or to their schools. We offer them sofas to sleep on. We lend them money or help them navigate hellish systems to claim entitlements. We educate them about safe sex because mostly their schools utterly fail at doing so. We engage in activism and let them yell through the megaphone and oh god they're too young to understand why we yell no blood for oil at every single demo how did this happen? We offer advice on talking to families or schools if needed. We do our level best, in whatever way we think we can - and we know only too well that it's not always enough - to make them feel welcome and accepted and safe.
And what works in one situation doesn't work in others. Queer kids tend to have supportive parents or are pushing away from their parents, sometimes living independently by necessity. Many neuroatypical kids are more dependent than average - whether by reason of their impairment or because there are no facilities set up to enable them to become more independent. It isn't a perfect parallel for many reasons. But as much as I wish that people would stop treating adults like children, or recognising the needs of neurotypical parents only, I also hope we can find a better solution than abandoning and ignoring kids who are like we were.
*well actually a bunch of them did. It's amazing what happens when you learn exercising =/= catching a ball and writing =/= to holding a pen, but that is neither universal, nor does it mean they weren't partially replaced by others.
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